Hello fellow comrades of this never ending battle with this desease.
My mo just came back from Germany with news of the LU177 treatment, over there they do the treatment before thinking of Chemo & if you are a German citizen it is free.
Unfortunately that is not me,i love it here in OZ down under but i will sign up for two treatments next week as psa is now 14.7 with no further involvment other than lymph nodes.
He has treated patients similar to my situation & reduced psa to 0.1 here.
I might add i finished with the side effects of ADT & whatever chemo had to offer.
Next year there will be trials here also.
My bit of Trivia for the Day!!
Good health To All!
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ARIES29
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I had Lu 177 PSMA treatement at the TUM (Munich) in 2016. One treatment took care of the lymph node metastases according to a Ga 68 PSMA done 5 weeks after the treatment.
Tango65, i am hoping for the same result as you, I have two lymph nodes that need treatment & of corse the prostate itself. Two treatments 8 weeks apart.
It took 8 weeks for the PSA to go from 0.8 to 0.4 (50% decrease). Five weeks later (13 weeks) the PSA was 0.2 and 2 months later it was 0.1. The decrease in PSA could be slow. The PSA initially could be elevated because of necrosis of the cancer cells caused by the Lu177. If there is going to be a decrease of the PSA it should happen around 12 weeks after the treatment. One has to be patient.
It is not a cure but it may prolong life with minimal side effects if the patient does not have large amount of bone metastases. I decided to try and to spend the money thinking that I did not have anything to lose.
I did my PSMA scan in London. They will NOT do Lu177 if you are not “avid”, which is a measure of PSMA expression of your cancer cells. It could have two reasons: your cancer cells do not express PSMA, or you have very little cancer cells.
My psa is probably 16 by now & was 14.7 last week at the ga68 psma scan so the mo offered different hormone treatment with same side effects or chemo with side effects.
Key word for me is side effects & quality of life, we all gona die anyway so the lu177 has few s effects & proven results.
My bank manager will have a fit but its my choice.
I read on this site in Germany it was around 7k in euro but the psma scan was around another 3k.Just search lutetium 177 & read on. Here in OZ it is nearly 10k a shot but there are trails now for non hormone sensitive men only.
I had a series of treatments since diagnosis in 2009, which was too late; I should have had full biopsy in 2005, which may have revealed Pca with Psa 3, and worth having removed.
I had Gleason 9+9, inoperable, after Psa just went over 6.
ADT gave tne mo(st life lengthening effect. But now Psa is about 27, lots of bone mets, and unknown visceral organ mets so maybe I have Lu177, because afaik, my mets are all PsMa avid. I might have Ra223. But now I have just had 3rd Docetaxel 6 weeks after beginning it with Psa 12, it went to 36, then 26, then 27, and could now rise, but in 3 weeks maybe it shows big rise so cabizataxel may be tried and Lu177 booked for 6 weeks later, I learnt I may be able to join a trial of Cabizataxel vs Lu177, where if thr Cabizataxel does not work you get on the Lu177 trial. But ZXofigo, Ra223 is not yet able to be done in Oz, and a guy told me its aud $68,000 for 6 injects. It is supposed to be better than Lu177 for bone mets.
I am chasing the horse after it has bolted, like so many others......
Yes i know that saying,chasing the horse after it has bolted. I do think i should carry on with the AdT but i have a young family & trying to keep up appearances.
Anyway reading your history with this i would have the lu177. It is expensive but it sounds like you would qualify for a trial, email; therap@ctc.usyd.edu.au or ring 0295625363.
I will try to get into trial for Lu177 in Sydney where it is Cabizataxel or Lu177, and if one don't work they put you on the other. I could just pay for Lu177 privately from Dr Lenzo, $40,000 for 4 infusions.
Six infusions of Ra223 cost $68,000. So similar cost per infusion. I know a guy who has had 7 x Lu177 infusions. He began in August 2016, still OK, 20 years after diagnosis.
He told me yesterday he knows guys who have had 40 infusions of Docetaxel.
My doc says Cabizataxel might work better because he gets more success than with Docetaxel.
I'm on day 4 after Chemo 3, not feeling wonderful, but in 3 more days I expect the gloom to lift a bit.
AFAIK, at least most of my Pca is PsMa avid. But I cannot assume it all is, and some Pca may have mutated so it makes no PsMa, and there just is no treatment yet unless you move to carboplatin, ie, platinum based chemo, a whole lot worse for anyone to handle. There is one chemo here that is top of list of 4 that are possible, but I don't about it, docs have not described it.
From reading the paper in the link above it looks like they would do a PSMA scan to determine this. And the more uptake the better candidate you are for this treatment - given this info I'm not in a rush to be a candidate for this treatment but I'm always trying to keep another weapon in the holster for when it's needed. It's on top of the list of questions for when I see Sartor again in November, he was recently in Australia I'm wondering if he was involved in the stage 3 trial going on down there.
Does anyone know if Lu177 treatment can cure lymph node mets. In other words, if you have several really avid lymph node mets and no bone mets, is the treatment potentially curative?
I had 5 PSMA avid lymph nodes in the pelvis and abdomen and they were PSMA negative 5 weeks after one Lu 177 treatment according to a Ga 68 PSMA PET/CT study.
If you get PG removed with bladder, penile urethra cut off low down, the distances of operation sites is a long way from cancer in PG. I know a guy who had this, and had his two ureters joined and a stoma and bag installed. He didn't want the successsion of treatments which just don't ever keep working.
He's OK 8 years later and his marriage is OK.
The RP has to be done real early to be effective, because 40% of blokes find Pca continues onwards afterward, and then its maybe also spread, so the horse has bolted.
In 2009, was diagnosed about 4 years too late; I had Gleason 9+9 at Psa only 6. But I bet 4 years earlier in 2005, Pca was well underway. PsMa scans cannot show microscopic size mets. Its a good scan method, but don't ever assume you have no mets once diagnosed, and its highly likely a man has mets when Psa and PG tumour develops past a certain stage, and no man can know all there is to know about it.
Lu177 and Ra223 only work where they can and like most EBRT there are survivor cells after each RT treatment. So they must be repeated, with increasing levels of side effects and toxicity building up.
The only hope for a cure seems to be in immune therapy where white blood cells are removed to make them able to detect cancer cells as being rogue cells and then kill them. Marsden Hospital in UK and German studies seem to be leading the way, and some guys are getting remissions after being given months to live, and with Pca that had mutated so much it is not treatable by many "normal" treatments. But so far, only small % of men get a benefit. So it may never become widely available, and maybe if you have had chemo your white cells have reduced so much that there are not enough white cells to be modified to fight better for you.
Cancer is cancer, and its going to be a long time before mankind is able to reduce the lethality. But the one certainty is mortality, and all men must be prepared to depart the living if Aunty Destiny says "time's up", and she knows all the things the doctors are ever likely to do. Despite my Pca, I have have lived 11 years longer than my dad, and had quite a good life.
While on Zytiga for 8 mths, someone pleaded with me to take avodart, because it helped the action of Zytiga, and I found I could get Tamulosin with avodart so I took that, and fulfilled the requirement to get the benefit this man said I'd get, ie, much prolonged effectiveness of Zytiga. No such benefit occurred, and Psa just went up, up after only 7 months. So I am very sceptical of pp saying to take this or that with Drug x or Y so make it it work better. It might for some, but definitely not for me.
I'll probably get Lu177 soon. Might give me more time. Hoo Noze?
Hello Cladius, the Technical University at Munich is where some men on this site have gone to. The contact was Dr Tauber & email is mriu.de/k_mit.htmlroberttauber@tum.de.
I understand there is one at Heidelburg also, but i will have mine in Australia.
Your dad will need to have a complete history of his treatments to send to them first & need to do the ga68 psma scan there first.
Hi ARIES 29.. we contacted Dr Markus Schwaiger but he is no longer in charge and referred us to Dr Eiber in TUM. We will be sending him all the medical records and go from there.
I had the Lu 177 treatment at the TUM in 2016 with Dr. Tauber, Dr. Knorr and Dr Schwaiger. It is a very good place.
They are very well equipped, with modern equipment. The doctors are competent and have experience with these treatments. All the doctors speak English. The day I had the treatment there were 5 more patients having the same treatment.
They had a nuclear medicine ward with private rooms where you have to stay for 3 nights. There is a doctor on call for this ward 24 hours a day.
1. How much was your PSA BEFORE and then after treatment?
My PSA was 0.8 when the treatment was done (I started ADT 2 months before going to Munich, my PSA was initially 10). Because of the drop in the PSA the doctors in Munich ordered another Ga 68 PSMA PET/CT they day before the study and they found the same metastases that were detected when the PSA was 10.
It took 8 weeks for the PSA to go from 0.8 to 0.4 (50% decrease). Five weeks later (13 weeks) the PSA was 0.2 and 2 months later it was 0.1. The decrease in PSA could be slow. The PSA initially could be elevated because of necrosis of the cancer cells caused by the Lu177. If there is going to be a decrease of the PSA it should happen around 12 weeks after the treatment. One has to be patient.
2. Side effects your experienced from treatment?
Only fatigue after the infusion which lasted about 12 hours. They want the patients to apply ice packs to the salivary and lachrymal glands for about 12 hours. I did not have any problem with these glands or any kidney problems . My creatinine did not increase at any time after the treatment.
3. How many doses of Lu177 you were given ?
I was given one treatment. At discharge they do a full body scan and a SPECT study to do dosimetry and to see if the Lu177 is in the metastases. They could not see Lu177 in the areas of the metastases identified in the Ga68 PSMA study the day before the treatment. This was a surprise finding. They requested another Ga 68 PSMA study at 5 weeks after the treatment. This study showed that the lymph nodes with metastases were PSMA negative, so the cancer in these nodes was gone. They decided to cancel the second treatment. They only treat if there are metastases that they can visualized.
4. Cost of whole treatment?
The Lu 177 treatment costs around 9 thousand euros. It does include the 3 nights in the hospital and all the studies before discharge (body scan and SPECT). If Ga68 PSMA studies are needed they cost around 2800 euros each.
5. How did you arrange for the booking and treatment at TUM ?
I arranged directly with Dr. Knorr (nuclear medicine) and with Dr. Tauber urologist working with the division of nuclear medicine. I believe Dr. Eibert is now in charge of this treatment. I know that Dr. Knorr left TUM. Dr. Tauber is still working in prostate cancer and nuclear medicine treatments.
6. How are you doing now ?
Two years later I continue in ADT and my PSA is 0.06.
Anything, please let me know. Good luck with your treatment.
This post has lots of good specific information for those interested in Lut177 treatments.
Regarding adding Avodart and Metformin to Xtandi or Zytiga, I asked those same questions to our new pCa specialist last week.
He said that Metformin is currently under study but has not been proven useful to be taken concurrently yet.
He said that Avodart will cause PSA to drop but is false because the disease will progress. He also said there is a many year history of Lutetium that was not successful in the past.
Yes the visit was less than hoped for as I wanted someone who would think out of the box. He only offered standard of care so disappointed.
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